Today Derek and Jack and I went to the driving range while we were waiting for Sophie at gymnastics across the street. The boys had fun, they had been once before with Rob and my cousin Dave. I was surprised at how far both of them could hit the ball. They also left quite a bit of ground turned up, as they thought it was easier to hit the ball when it wasn't on a tee. You can see Jack squatting down behind Derek in one of the pictures trying to get the ball to stay on the tee, which wasn't easy for him. But never the less he did get quite a few to stay. One time he couldn't get the ball to steady on the tee, so he picked the tee up out of the ground and threw it into the range. Then he found another tee on the ground and used that one instead.
Jack is feeling well, it has been 4 days since his last chemo and because we don't have chemo until Friday this week I think he will have a week where he is feeling great.
In church on Sunday, we had a dramatic presentation by Curt Cloninger, all of my kids enjoyed it. It kept their interest and they listened attentively. Rob and I had not thought to explain to the kids beforehand what was going on, I guess with Rob doing drama's we thought they would understand that is what they were seeing. At one point Curt said, as Jesus, I think during the passover meal, "I am going to die,"..... after the final words that were spoken in the drama, Curt walked down the aisle and out of the auditorium, Jack leaned over and said, "Is that guy really going to die in three days?" So when I told Jack that this man was acting and saying the words Jesus said in the Bible, Jack said "OOHHH" and all the cogs clicked into place.
To a different subject, one that has been heavy on the heart of our family this weekend, my cousin David Gililland lives in California, attending the Fuller Institute, is visiting Abilene with his wife and 2 kids. He grew up here and we look forward to having them back full time next year. Friday night he and his brother Michael were out late hitting golf balls at the same range you see pictures of, they left the golf course, and Dave was headed home. He was by himself in his car and saw 3 young ladies standing on the side of the road with the hood of their car up, he rolled down the window, and asked if they needed help. They asked him if he could jump start their car and Dave pulled over to help. The moment he got out of his car 2 men hit him from behind, stole his wallet and other personal belongings. They beat the pulp out of him. No bones were broken, but his body is wounded from head to toe from the gravel ground he was on. I do not know anyone who is kinder and more caring for people than Dave. I have thanked God for him and his example of Jesus' love on earth. He is one of those people who you love to be around, he is a ton of fun, and always smiling. Please pray that his body and emotions heal. He is still smiling, but I can't even imagine what was going through his mind. He is an awesome man of God.
So 2 trips to the driving range in the last couple of days, with very different outcomes. In a split second things can change in our lives. The only constant thing in our life we can hold onto, is our Lord. Our stuff can be stolen or blown away by a hurricane as we have seen today, our health can turn in one moment, people who we count on can let us down, the only thing we can stand on firmly without being let down is our Rock who we call Jesus, Immanuel, God with us.
August 29, 2005
August 25, 2005
August 24, 2005
Long day, got home from chemo at about 5:30 today. Once Jack and I get to the Dr.'s office, we get sent to the back where the chemo is given. At that time Nurse Sara hooks Jack's port up to the line and then she draws his blood samples. Somewhere in that process or right after the order for the chemo drugs are given to the pharmacy at the office. Today they must have been busy because it took over an hour to get Jack's chemo drugs. So Jack started on his chemo at about 2:15 so we left after 5pm.
Which brings me to my thought for the day, have you ever been thankful for Scooby Doo? Jack loves Scooby Doo and all of his cohorts. He especially loves it when Scooby and Shaggy make rude noises (eeek). I am so glad that even though we are sitting in a doctors office for hours on end that Jack is watching Scooby on DVD, and playing Scooby on his gameboy. He is doing a double Scooby maneuver. I am glad that Jack passes time with his loveable dog friend, but mostly I am thankful to see him laugh. When he laughs out loud, it comes from the belly. He has a great laugh, and he laughs alot when Scooby is involved. Some things I will never take for granted again, and one is Jack's laugh, it warms my heart to see him cracking up.
Sometimes when we need cheering up we put on the Three Stooges and watch Jack. I don't even bother watching the movie because I would miss watching Jack.
Speaking of Jack he is dressed up in some fine duds for church tonight. He has a dress vest and dress pants that don't match, a red t-shirt with a pocket under the vest, and I am sure he will be wearing either his cowboy boots or maybe white sneakers. Either way it will be an outfit which no one has seen before. I can always count on Jack to make me smile. I love his wild outfits. He just told Rob, "I am going to look good tonight for church."
When we saw the opthamologist Saturday he prescribed dialating drops for Jack. The eye that turned in from the tumor, which was surgically fixed a couple of weeks ago, is weaker than the eye that stayed straight. So every morning I put a drop in Jack's strong eye which will blur it, actually it dialates it, and will make his other eye work harder. I think we will be doing this for a couple of months. So Jack will have his cool shades with him most of the time, to protect that dialated eye from the bright Texas sunlight. He didn't want to take them to school today, so he left them behind. When we got to his school I asked him where his sunglasses were, and he said I didn't want them. When I explained that he couldn't go to recess without sunglasses, he asked if he could borrow mine. So Jack wore my sunglasses today at school. I am sure that people who don't know what is up with him think he is crazy wearing his mother's sunglasses, but that was the price he was willing to pay to play.
Jack's counts are staying high which means he is staying healthy, thank you Jesus, thank you for shining your mercy on us today.
August 19, 2005
Today is Friday and we have completed our first week of back to school and our second chemo treatment. One of those events could wear me out, two together definately make me ready for the weekend. Jack has enjoyed being in school, I am learning that days 2 and 3 after chemotherapy might be the hardest days for him. The ebbs and flow of the nausea are not easy to figure out without some trial and error. Zofran which is the anti-nausea drug Jack is on every 4 hours keeps him from feeling sick, so well in fact, that I thought he didn't need dosed after the first 36 hours. Big mistake, it is only an illusion that he wouldn't be sick, the Zofran does it's job well. Thank you God for Zofran. Needless to say, Jack was pretty sick yesterday when he woke up, I gave him a dose of the Zofran a.s.a.p., but he never really got back to feeling good. I went ahead and took him to school once he felt well enough and after breakfast, he wanted to go, and I think that school is a great way for him to not focus on how yucky he feels. At 1:30 I heard from the school nurse and she said that Jack was reporting he had a sore throat. I had figured out that when Jack is complaining of a sore throat he really means he has jaw pain, which is a side effect of the vincristine chemo drug. By the time tylenol would kick in it would have been after school, so I went and picked him up and we had a nice hour together before picking up Derek and Sophie.
Saturday we have a follow up appointment with Dr. Moody who comes to Abilene one Saturday a month. He is the opthamologist that performed Jack's eye surgery a couple of weeks ago. Jack's eyes look great. They are barely bloodshot anymore and they are straight again.
Next week our chemotherapy appointment moves to Wednesday, so they will be edging us to a permanent Thursday day. That will be great for Jack because by Monday he should be ready for 3 and a half good days of school each week.
How is our family doing with all of this?
We are doing well. Derek and Sophie are compassionate to Jack and even though there are typical sibling disagreements, all in all they are looking out for him. Sophie is his twin, she looks after Jack and is concerned for him. Jack does not like taking all of his medications, and vitamins, so every now and then he has a meltdown (atleast once a day), but one day it was particularly dramatic and he was lying on the floor, crying big tears, and tearing our hearts out. Sophie went and got her special silk blanky and layed it on Jack's hands with tears in her eyes. She said, "Here Jack hold on to this it will make you feel better." Little did my mom know before she died 5 years ago, when she made Sophie that blanket, that it would be an offering from one of her grandchildren to the other.
We all do everything we can to make Jack feel better, and I know it helps, but the hard truth is - it is happening to Jack, and when it comes right down to it, it is he who has to deal with it, that is alot for my sweet 6 year old boy. God will use all that Jack has gone and is going through in his life, he will be stronger for it, he will have extra compassion for sick children, I can already see the way it is molding him.
Rob and I are holding on tight to each other. I think that serious illness can cause, and many times does cause trouble in a marriage, but this is where I am on my knees thanking God for the man he sent me. Rob is calm, loving, compassionate, he is not quick to anger, and not easily frustrated (or atleast he hides it well). He is a rock in our family, he loves the Lord and spends time in God's word every day, he is a man of prayer. He honors me and makes me feel like I am so special to him. So we are holding on tight to each other, our kids, our family, church family and friends, and claiming the love of Jesus to direct us through this time.
God bless each one of you who pray for us. I have said this many times, but with all of ya'll in our corner we feel like we have the best support group ever.
August 16, 2005
Jack has had a good day at chemotherapy. Took 4 hours to the minute today from start to finish. No problems at all, we just went right in with no extra complications today. I was very curious as to what Jack's ANC counts would be today, after his one session on chemo last week. I am excited to say that his counts are better than they were before his fist chemo treatment last week! Jack watched his favorite movie Scooby Doo 2 and played his gameboy, and before we knew it he was done.
This was also the 2nd day of school, and all the kids are having fun, and learning too! Jack was disappointed to leave school early today to go to chemotherapy, but that is where our two worlds are interwoven right now. Healthcare and our daily lives. Jack loves his teachers and is always happy when he has friends around. I am so glad to have him in such a great atmosphere at school, all the teachers are so kind and helpful. Jack's smile makes everybody love him.
I bought the new Amy Grant Cd which she sings some old favorite hymn's and the first song is Anywhere With Jesus I Will Safely Go, I love that song and it is so comforting to sing those words right into my heart. I am grateful to be able to lay my burden's down and have our Sweet Heavenly Father lift them for me. I feel like this year I must just lay at His feet and He will carry all of us through, but I am so glad for the grace he shows me when I am struggling in my faith. I love the song which I haven't got the first clue of the name but it says, when I am strong enough I will stand on His promises, and when I'm not I will fall on the grace that called me to Him in the first place. My days are filled with both of the previous descriptions, strength when I rely on Him, and falling when I only rely on myself. I know that Light of His Glory is shown through the cracked clay pot I am. Thanks for your prayers we feel them every day.
August 13, 2005
Derek, Sophie, and Jack had meet the teacher night at school on Thursday. We met all of their teachers and met old friends in their classes and new friends too. Jack is in Mrs. Ake and Mrs. Isbell's class, Sophie is in Mrs. Tutt's, Derek in Mrs. Bounds. During the summer the principal from the elementary called and told me about a new inclusion class that was being formed in the 1st grade. They were bringing in 3 children from the special education department to include in a mainstream class and that class would have 2 teachers rather than one. She thought I might consider this class for Jack. I thought it would be a good idea as his small motor skills are still redeveloping from the tumor. And because we don't know what this year will bring, 2 teachers means a little extra help is possible.
I went over all the medical stuff I needed to pass on to the teacher and to the nurse. My greatest concern for Jack is that he stays healthy and pray that God will put a hedge around him from unecessary germs this year. I will pray that every day for him. Because his immune system is compromised due to the chemotherapy, he is at more of a risk for hospitilization over any kind of fever, cold, flu...He is on a daily dose of bactrum which will help him as far as bacterial infections, but all those virus' that hang around school rooms are not affected by antibiotics. The oncologist said point blank, "Do not seclude your child, or keep him sheltered from other kids, let him go to school." He said seclusion causes more long term damage to the child's psyche than an illness will cause. Every week he will have his blood counts measured from a blood draw they do right before the chemo is given. Those numbers will help us know just how strong his immune system is, so that is our weekly guide to where we go.
As 4 days have passed since Jack's first chemotherapy treatment he has done well. He stayed dosed on the zofran for 12 hours after chemotherapy (the anti-nausea drug), did well the very next day, then the 2nd day he woke up nauseated, so I started him on the zofran again that day which made him feel better. The zofran tastes like a piece of metal melting in your mouth, so as you can imagine he is not too hip on taking it. We might try the liquid form next time and see how that tastes. The best news of all to Jack this week, was because he is feeling so well, that he and the other two kids were able to go ahead with their regular sleep over at the grandparents on Friday night. Everyone was happy about that, especially Rob and I because we celebrated our 10 year anniversary by going to a dinner and a movie.
Thanks for keeping up with Jack and our family, keep their new school year in your prayers.
August 09, 2005
Updates on Jack
One chemo down....Jack did great today. Besides some time delays to get insurance stuff worked through, the first chemotherapy went off without a hitch. On our way to chemo Jack said, "I wish I wasn't the chemo kid, it is so boring." As far as Jack is concerned boredom outweighs most other bad things he has to go through. I had 4 bags of stuff to carry in to the chemo trip today, filled with activities for Jack to do, a couple of new things I had bought for him from the clearance shelf at Walgreens yesterday, a portable dvd player with 4 movies to watch, and he is already bored just on the drive there. It looked like we were moving in. Filled out the paperwork, then they sent us back. I had put on the emla cream over the port an hour and half before, so the stick in his port only hurt a little. They hooked him up to the iv line and took his blood for his counts. 2 hours later the nurse came back and said that they were having a hard time getting insurance to work out, because they were not an authorized provider. Well, if only someone would have told me 2 hours ago, I could have given the name of our case manager, who can make anything work out it seems. I gave them her number, they decided it would take a couple of days to get approved so they sent us over to Hendrick Hospital to the pediatric wing, who was an authorized provider, and the nurse followed us over there, signed more papers, then waited for the medicine to be sent up. At about 4:30 we started chemo. We finished at about 7:00p.m. and came home. Jack did well, although ofcourse slightly bored at times. (The office called the case manager and within 15 minutes everything was approved and worked out, so they said we could come back and get the chemo there, but we had already dirtied a hospital room, and the nurse thought it was easier to stay put where we were, so we stayed put).
Jack seems to be doing well, not feeling sick at all, he got home to see that Rob had aired up the tires in all the bikes, so currently Jack, Derek, and Sophie are all riding their bikes out front (eeeek!!!!).
I am staying inside because a. Jack's not supposed to ride a bike right now. b. I would drive him crazy saying be careful 100 times a minute. c. I would be even more of a nervous wreck than I am now. But he is a 6 yr. old boy who has been sitting still for 6 hours. And I think that the no bike riding probably means no crazy bike riding, jumps, riding fast, slamming on brakes...and Jack is still on training wheels which prevent him from going anything but slow. So I will let him play and have fun with his daddy, but just not look.
Our next chemo date is one week from today, Tuesday, the 16th. Same bat time, same bat channel, and now we know all the paperwork is taken care of we should be in and out in 3-4 hours next week. Thanks for your prayers, today was good.
August 07, 2005
At the bottom of Jack's daily update there is a line that lists:
Posted by Tammy M. at something o'clock __ comments
The comments word is what you click on, it will send you to the screen to leave a comment in the box.
You can sign your name in the box after the comment, then click on anonymous, then click on
login and publish button. I hope that helps some that would like to post but weren't sure how.
August 06, 2005
August 04, 2005
Updates on Jack
I just spoke to the chemo nurse in Abilene and Jack will start chemotherapy on Tuesday. The drugs they will administer to Jack will be vincristine and carboplatin, these are the standard drugs for Jack's type of tumor. Nausea, vomiting, and hair loss are the common side effects. Carboplatin can cause an allergic reaction in many kids so they dose them with benadryl first. On the pediatric brain tumor website I asked others about their children's experience with this protocol of drugs. Those
(5 mom's) that responded said that although it didn't shrink or make the tumors go away, it did stop them from growing for the time they were on the drugs, and a time after. So in essence it bought those families a year to 2 years before radiation had to be used. The closer a child is to 10 years old, the less drastic the side effects of radiation have on their brain regarding learning difficulties and developmental delays.
Jack and I went and talked with Mrs. Davis, the principal at Jack's school. She was so helpful and made me feel comfortable about Jack's needs if he can't make it to school on a regular basis. I hope that he tolerates the drugs well so he can keep a schedule, but one teacher told me last year, don't worry about the school work, they can always catch up, focus on his immediate needs. I have to continue to remind myself to not sweat the small stuff. Do not worry about tomorrow, it will take care of itself.
Till the next time...............pray, I know you are.
Updates on Jack
Chemo in Abilene is definate. Only one place in Abilene gives chemo to kids, it is a satellite office from Cook's Children's hospital in Ft. Worth. We notified Dr. Bowers we did not want Jack to participate in a clinical trial by email on Tuesday night and got an email back from him stating he would contact the oncologist at Cook's who is overseeing the chemo delivery here in Abilene. The nurse who delivers the chemo does so on Thursdays, so I am not sure if we will start today, highly unlikely as I haven't heard from her. So a week from today could be the start date.
Jack's eyes are not giving him any trouble, he still wears his sunglasses day and night. He definately doesn't like the antibiotic drops, 3 times a day, for 5 days, about 3 days left. All of the kids are slumber partying in the living room together. I think that Jack likes to have his brother and sister within arms reach at night. The port is bandaged so we haven't seen the incision sight and wont until tomorrow when we are supposed to remove the dressing. The bump under his skin is not as pronounced as I thought it would be, it is more of a lump than a bump.
This note is to the Southern Hills family - I just want to say thank you so much for all the love you give Jack and us when we are at church, and not at church. We love you.
August 02, 2005
Updates on Jack
We got home an hour or so ago from Fort Worth after the completion of 2 successful procedures. Rob, Jack, Elaine (Rob's mom), and I went to Fort Worth yesterday and stayed in a hotel close to the hospital. We got there bright and early this morning and checked in. All went well, but Jack's nerves got the better of him and he lost yesterday's food (as he couldn't eat today at all) a couple of times. He was real nervous. When I explained to the anasthesiologist that the last time Jack had surgery he couldn't open his eyes, walk, eat or talk for weeks, he understood why Jack was a little nervous. All and all it went well, and Jack was ready to go as soon as he started waking up. An hour or so in recovery and we headed back to Abilene.
Dr. Moody gave Jack Batman sunglasses and a baseball cap to help protect his eyes from the bright sunlight, and Jack has said he plans on not taking them off even at night. He took one look at his eyes in the mirror and noticed the trauma inside his eyes (all the blood) and turned away pretty quick. I think that the sunglasses are a good choice until his eyes heal up a bit. Karene and Sarah joined us in the hospital to wait out the surgery and it made time go quick and when I don't think that I will ever laugh again, I crack up at my wonderfully entertaining friends. Thanks to both of you for making the drive and then taking care of us when we got home.
We know we are supposed to start chemo this week, but don't know date or time. Keep Jack in your prayers as this is a procedure filled week, and he has alot of stuff to work through, although he is doing a good job of it. Thanks for all your prayers.